Radiation February 2019

Vivian4

FaceForward,--I am one of those who wants to know, but my RO today thought I was questioning his knowledge and authority, got frustrated and mad, and told me to get a second opinion. My husband was with me. He thinks he is a jerk. I don't have time to get a second opinion as this RO spent almost 6 out of 12 weeks of family leave planing (!?) my rads. One thing he did answer today though was this: Longer treatment course means lower doses each session. However, because a lower dose is delivered everyday, they need to increase the total dose administrated during the entire treatment to create the same "biological response" (or the mass-radiation interaction). Though I still wish I could get 40 grays in 33 sessions instead of 60 in 33, I was satisfied with that answer. He also said lower doses lower the risk of fibrosis since the breast will have a better chance to recover. It will be gentler and hopefully easier to bear.

Misha13

How are you ladies holding up?

Sending out hugs and prayers that everyone’s skin is holding up and mental states are okay!

OTMom

Today was my last whole breast treatment. 5 days of the boost to the scar area and I'll be done. Last week my skin went from just a little dark to pretty horrific pretty quickly. It's varying shades of red, brown, and purple and super rashy and ugly. It's not horribly painful, but itchy and uncomfortable enough that it kept me up part of the night last night. Uncomfortable to have anything on it, uncomfortable to have too little support, nipple is super painful if it brushes against anything. My poor daughter has walked in on me lotioning at various points and cringes each time she looks at it. Super tired. Glad that the end is in sight.

Jen2Mom, I hope you were able to get some rest this weekend and that today was better than Friday.

Sending good thoughts to everyone as we start another week.

Mymomsgirl

Tomorrow will make 2 weeks, with one more left. Last Friday my skin started to get a little darker, more tan than red, and it has gotten a little darker each day. Yesterday after my treatment the scar from my reconstruction at the bottom in what they call the fold area started to get a little irritated with wearing my surgical bra so I whipped that off and have been wearing a stretchy cami for a little support instead. This morning it felt fine so I wore the bra until after treatment. I only have 6 more left, here is to good weather for my drive and my skin continuing to handle the treatment.

On another note my facility has a Reflections Wellness Program that is free for those going though cancer treatment. Yesterday I went for a Reflexology appointment before my treatment. I've had massages before so I thought I would try this to see if it would help my muscle tightening and the stiff neck I have from turning my head for the breathe holds (that 45 minute simulation 3 weeks ago did my neck in and I haven't been right since). I was amazed at how much of a difference that session made in my muscles. I'm going again next Monday. If you haven't looked around for something like this in your area you should.

FaceForward

I have 1 more whole breast treatment then 4 boosts and I'm done. Finally. The aches & pains & fatigue is real but I rest when I have to and keep moving when I'm able. I'm really rashy and the itching wakes me up at night as soon as the cortisone wears off. My nipple feels raw and at times feels like just looking at it causes it to hurt. My breast is varying shades of the rainbow. Other than that, Yay! I'm almost done! 👍 That's enough to keep my spirits up and my eye on the prize. I have what I've always called "good Irish skin", meaning I'm pale & burn easily. However, it's held up remarkably well during all of this. So far, it hasn't broken or started to peel at all. Crossing fingers it makes it thru the next week. This is inconvenient and uncomfortable but not insurmountable.

I CAN DO THIS! YOU CAN DO THIS!

Vivian- Sorry you don't like your doc. Wishing you well and hoping things smooth out for you.

JB1165

FaceForward, my nipple was raw and in constant pain after week 2. I got those silicon gel petals and use one over a layer of aquaphor and it has made a huge difference. They can be rinsed, cleaned, and reused.

I finished my 20 treatments on Friday (4 boosts, 180 for all 20 treatments). I was told that most of my non-skin side effects weren't related to radiation (vomiting/diarrhea and emotionally unpredictable), so I guess this is my new monthly normal after birth control pills (including bleeding or spotting all 20 days of radiation).

For the skin side effects, skin was mildly burned from day 2-3, with dry patches here and there that responded well to aquaphor or miaderm. Miaderm gave me a mild rash, but the techs say my skin looks good, so not worrying about it. The nipple has been the problem area so far (tumor site was just below there, so it's been through a lot). Noticed this evening that the top layer of the skin's starting to come off and can't tell if the bright pink skin underneath is healthy or burnt. For now, it's covered with aquaphor and a silicon gel petal and stabilized with a sports bra to minimize movement/friction overnight, so I hope I wake up to healthy skin and not crispier skin. 🤞🏻

KerLyn

hi all! I have 7 treatments left, I’m at 23 out of 30 today! A little pink, some rashes that go away quickly with hydrocortisone cream, I’m feeling very fortunate as far as SE’s go.....however as of this morning I now know what a “zinger” is....yowzers!

CHB87

Holding up ok

Yesterday was the last full breast treatment and today begins to the boost. Not a moment too soon as my skin is done. Pretty red, enlarged hair follicles and, some breakage in the middle and underneath. The fatigue is serious. I feel like I am running on fumes today at work. I have been trying to keep up with the gym but with the skin breakage, I am not pushing it. Final boost treatment is next Wednesday and then I am off from work for 6 days and then on the 22nd BELIZE BABY!!!!!!!!!! Whoooohooooo. Can not wait to rest (and drink all the rum) in the sun (I will keep my angry little boob covered, don't worry). Right now the fatigue is wearing me down but I am determined to keep going until next Wednesday and then I plan on sleeping and watching "my stories" (what I call the Jersey Shore...please don't judge me hahaha) for 6 days after that! We got this ladies, we got this.

Mymomsgirl

Today wrapped up 2 weeks, 1 more to go. I'm so ready to be done with the drive. I felt more tired this morning, I'm trying to tell myself it is the weather not fatigue setting in...lol trying the mind over matter concept.

CHB87 have to admit I'm jealous of your plans, enjoy!

Jen2Mom

Finished up session 13 of 30. Skin is holding up fairly well, Just seems very tight in my side "foob" area and is sometimes uncomfortable at night. I got some rest over the weekend and Monday and Tuesday were okay but found myself crashing today so I left school at 11 and it doesn't help that I had to take my daughter to the dr and she now has bronchitis. I meet with the RO tomorrow and I am going to talk to him about maybe taking Wednesday's off from school to give me a break during the week, I am just exhausted! I'm also very emotional, I guess from being so tired. I had started zoloft when I was first diagnosed in Oct and gradually weaned off a few weeks ago b/c my MO said zoloft would intefere with tamoxifen when I started it in march. At that time I was feeling emotionally better and thought I would be fine without it but now I'm not so sure...I'm a basket case! Not for sure if its just from being tired or if I truly needed meds to take the edge off....stay strong ladies...2 more days before a break this weekend!

Vivian4

I had my second today. 31 to go...

My hair and eyebrows are coming back.. Something to be happy about...

Dani444

Hello everyone! It has been about 2 weeks since I finished rads, just wanted to drop in and give an update. My skin is back to normal in most areas. Just a couple of spots on my scar are still pretty pink. My underarm still feels irritated at times but looks pretty good, and it is not nearly as intense as before. I do still have some mild chest wall tightness, especially if I over do it at work with lifting. I have seen the BS and PS since finishing. They both noted some minor swelling but were not concerned. The BS did an ultrasound in the office of some lumps I felt in my upper chest. She thought they were radiation changes and said we will watch them. The other lumpiness along my side was felt to be radiation changes as well by both the PS and BS.

Congrats to those who are heading into the final stretch! To all, you are strong for going through this, be proud of yourself!!!

Jen2Mom- I was wondering if you had been referred for PT? I found it helpful and was given stretches to do. They also did measurements of my arm since I had rads to my nodes. Maybe that would help with the chest wall tightness. Mine got pretty tight as well and it is so uncomfortable!!!

CHB87- what a trip to look forward to!!!

Gentle hugs and healing thoughts for everyone. I appreciate all of you and this community.

Misha13

Jen2Mom-Having Wednesdays off sounds like a great idea! I may do that if I get much more tired.

Vivian-Yay for hair growth! I’ve got eyelashes and eyebrows again. Once they start growing, it comes in pretty quickly.

JB1165-Where did you get the gel pads? My nipple feels pretty sore.

Faceforward-Thanks for the encouraging post! We can do this!! You should be almost done by now!

KerLyn,CHB87, Mymomsgirl-Way to go! The finish line is approaching for you all!

Dani-Thanks for checking in and letting us know that the end will bring some relief!

8 down, 20 more to go. I’ve got a pink foob and underarm, but the calendula lotion and aquaphor seem to be doing their job.

HPFULL

Hi Checking in. Today was day 13 of 33. I still have pain from that darn surgery but started PT and they are going to try and break up all that hard tissue so maybe it will heal and get more blood flow so for that I am sooo grateful. I was getting red but now uses the hydrocortisone before my lotion and my skin is holding up really well! The main SE I seem to be having is that I am so tired/fatigued. I have been taking naps in the afternoon and going to bed early. I also have zero appeitite and sometime feel nauseous right after RADS. The nurses told me that appetite lose/nausea was from the fatigue, but I am not so sure.

Vivian- So glad you eyelashes and eyebrows are coming back

Jen I hope you can take Wednesdays off. I recently went on Effexor for depression as it doesn't interfere with tamoxifen. It also helps with hot flashes and nerve pain which is a huge bonus, but it's for depression. It has been a HUGE help to me. I was getting so down.

Mymomsgirl- Congrats on your last day!!!!! Whoohoo  

CHB87- Wow! That trip sounds so wonderful! I hope you have a blast.

Last week when I broke down while in RADS the techs asked if I had any music requests (they always have music playing). I mentioned anything but sad music. It took a minute to register as I was so out of sorts that day, but as I was getting up I noticed that the put on the song "Happy" by Pharrell. It was really the sweetest

JB1165

Misha13-I got mine at Target in the bra section, but there are multiple options on Amazon if that’s easier (search ‘silicon gel pads’).

Good luck to everyone getting radiated tomorrow-it always felt so good to walk out of there on a Friday, knowing that it would be a couple days before having to return

OTMom

Misha- mine were from Target too, but you might even be able to find them in the baby section of a well-stocked drugstore. They're marketed for nursing moms, so anywhere that has that kind of stuff might have them. My nipple is pretty unhappy, and putting one on under my bra this morning was definitely helpful.

Jen2Mom- taking a day off midweek sounds like a great plan. You have to do whatever you need to give yourself the rest and recovery time to get through this. The fatigue can be pretty intense. As far as the emotional part goes, sometimes you can have a bit of a rebound effect right after tapering off meds, so that could be part of what's going on. But this is also a pretty exhausting and emotional process, so it makes sense to be having a hard time regardless. It's all just so much. I seem to swing all over the place with my emotions right now, and I've been on meds for a long time!

Hpfull- I hope PT is helpful. My RO said nausea wasn't a side effect and that it must be dehydration, but I disagree. I've had very little appetite and intermittent nausea the whole time. Things are a little better this week with intense focus on hydration, but it's all still there. I think it's easy to discount side effects when you're not the person experiencing them.

Yay for hair growth, Vivian and Misha!

Apologies to anyone I missed. You're all awesome for continuing to get through this.

Three more boosts and I'm done. Appointments with MO and pulmonology next week (check-in on lung nodule found in CT) and then I get a little bit of a break I think. Looking forward to having my body back under my control, even if just for a short time. My boob is like something from a freak show now. So many different colors. Everything is super sensitive and itchy and sore. I don't know what will happen with my hormone plan, but no matter what I'm giving my body some time to recover before introducing anything else. I got sick between surgery and rads, so I feel like I just haven't had a chance to catch up since the diagnosis. I wish I hadn't used up all my leave with medical stuff because I would love to take a day or two to rest and do something enjoyable or at least non-cancer related.

Good luck to everyone getting through today. So close to the weekend now!

Julia46uk

Hello All,

I’ll be joining you here, my first radiation treatment is scheduled for February 13. I’ll be getting 16+4 boosts. When I asked my RO about how he determines number of treatments, he said that biggest factor is size and shape off the breast. So far I was recommended to use only Calendyla cream and switch to Dove soap/bodywash. Also by the ‘new’ guidelines deodorant is fine to use in my RO office. Anyone have a comfortable bra recommendations?

Prissy

Hi everyone - it was so good to scroll through posts and see how everyone is doing. Congrats to those who recently finished or who are almost done! Woohoo!! And welcome to those who recently joined. This is a good place to find encouragement, support, and ask questions.

After this afternoon I will be half way to the finish line! So far I have done pretty well. My boob is very tender and aches but no radiation burn yet. I use Radiaplex gel and Miaderm several times/day and that has helped so far. I have been wearing a cotton cami against my skin and then my bra on top of that. Wearing a bra alone is very irritating for some reason. I do get zingers where my sentinel node scar is. Those hurt! Like several of you I have also had bouts of nausea. Mine does seem to be connected to how well I hydrate. Just trying to drink lots of water! I am going to a stretch class at the Y about 3 times/ week. Not super active but at least I am moving my body, slowly but surely. I can’t do all of the movements but I’m ok with that.

Heading out of town for a wedding this weekend. My husband and I love to dance, but probably won’t be as active on the dance floor this time around. The thought of my boob jostling around makes me hurt already! But it will be a nice break and get away and I’m looking forward to it.

Hugs to all of you warriors. :0)

determinedat54

Good morning everyone. Today will be #20 of 34. Any recommendations on itching? I’ve had a rash now for at least a week. I’m using the Radiaplex, aloe Vera gel and have a rx for hydrocortisone cream. My RO said I could try aquaphor. Any advice would be greatly appreciated

santabarbarian

Hi everyone,

I am about to join you guys. Starting Monday, I will begin proton rads, about 30 sessions (I forget but 6.5 weeks). I decided to pursue proton radiation because my tumor was on the left side-- and because of TNBC being high risk, despite my pCR from chemo, I still need full boat radiation to whole breast and lymph nodes. The big difference is that a proton beam can be programmed to stop, rather than exit the body. So it stops before your heart.

Is anyone else getting proton rads? The side effects are essentially identical to regular rads. My intake for rads involved tattoos and also them making a foam mold for me to lie in so I am in the same position every time.

I am also going out of town for the radiation. I live in CA, and am going to NJ because I do not know a soul in the two towns in CA that offer protons. I picked Procure in NJ primarily because I used to live in NYC and I figured if I have to devote a month to rads, I might as well pick a place where I know people to have dinner with!

My big hurdle will be flying coast to coast w my two 6 month old kittens tomorrow night. They will be in cabin w me. I found a cat friendly extended-stay hotel but the schlepp seems challenging!

OTMom

Julia46uk, I bought a couple of the Makemerry bras from AnaOno. They're super soft and designed by a RO. They're also pricey but I asked for gift certificates for Christmas and my family helped out.

Determinedat54, I'm trying cortisone now and hoping it helps. The itchy rashes are rough.

Santabarbarian, safe travels! I hope you're able to spend time with friends to make the rads time pass more pleasantly.

Prissy, happy halfway!

CHB87

Dani444-good to hear things have settled after two weeks. I have three more treatments left and my skin is ANGRY. super burnt and peeling underneath. I'm in the overly dramatic "I'm going to feel like this forever" stage so it's nice to hear there is relief

Jen2mom-hoping you can get wednesdays off.

I was suppossed to work until Tuesday and take the rest of the week off to rest after my last treatment...my skin got so irritated/burnt/raw I couldn't do it. went to my boss on Thursday, told I'd be working from home for the rest of the week and my time off will start Monday. I tried but the pain got too bad and because it's under the boob, the only thing that helps is laying down and letting the area get air (I've been laying in bed answering work email topless, like a lady). smearing silvadene all over.

boyfriend wants to take me to a flyers game tomorrow. I told him no promises I wouldn't press the boob against the glass just for the cool sensation. if I dont laugh my way through this....

beach5

Hi ladies, joining this group. I completed my 8th treatment yesterday. My plan calls for 30 treatments including 4 boosts. I have the first spot in the morning at 6:30am, and have been off to work after with a normal day planned. I also travel home on weekends. Fatigue seems to settling in, but not sure if its the radiation, early mornings, travel or a combination of all!

My skin is holding up pretty well so far. A bit pink on upper chest and the nurse believes a little swollen, but I can't tell. I'm using miaderm and had immediate reconstruction with an implant, so we are watching for any signs of capsular contraction. So far, so good. The techs are awesome, and always have a smile and kind words.

After 3 sessions I started getting mouth ulcers. The RO seemed perplexed and she and my MO believe it is not radiation related, but rather a delayed chemo SE. I've been on/off chemo for a year and have never had mucositis and my last chemo stopped 6 weeks ago, so it all seems a little strange. They are watching it to ensure its not thrush. I'm still on H/P so we will see what my labs are this week before infusion.

One day at a time and before we know it...we will be looking back on it. Thanks for all the support and information.

Piksie

Hi ladies. I heard through the grapevine that this is the new place to be (thanks, egregious!) So this is mostly a cut and paste.

I started radiation on Jan 28 and have done 10 of 33. 25 whole breast, chest wall, axillary, and supraclavicular lymph nodes; 8 boosts. I'm just now starting to have mild SEs. An occasional zinger in one small spot, a little tired (but nothing new), and just a tad bit of redness above my clavicle. My RO strongly recommended Mometazone twice per day, so that's all I've been doing so far. Although I'm mixing it with a lotion because it's thicker than Baby Butt Paste!

I'm really hoping my energy level holds as I have two active boys, and I don't intend to take any time off work except for the daily trip for rads, but I do it early in the morning so only miss about 30 minutes most days. Work has been very supportive of my cancer journey, but my boss keeps comparing me to his 80 year old neighbor who "did just fine" with radiation. I don't have it in me to point out the obvious differences between her treatment and mine. Still, when fatigue hits, I plan on napping at work.

After this first 33, we are going to hit T6 and my 9thrib. They've yet to be planned out, but it's coming. The proximity to my spinal cord makes me VERY nervous! But I guess it's gotta be done… Has anyone here had bone rads?

FaceForward

We are getting slammed here (Seattle area) with winter storms. Another one coming in tonight and it's predicted this weather will continue for several more days. I barely got to my Thurs & Fri appointments and I'm worried about making my final 2 treatments on Mon & Tues. My RO said to call if I can't make it and not to worry, they'll just reschedule. That sounds nice & accommodating but...It's MY LAST 2 TREATMENTS! I told him he obviously didn't understand how motivated I was to finish on time. 😊 Last Wed was my final full breast treatment. Thurs & Fri were boosts. I thought that would give most of my breast a head start on healing but, nope. This weekend has been the worst! My rash has turned into angry red, purple-ish, scabby, painful blisters. I am constantly hydrating and slathering on goop. Whenever my breast moves at all, it feels like the skin in my sternum and underarm areas is being shredded. OUCH! I can't even sleep at night it hurts so much and I'm soooo tired. My RO warned me that once I'm finished, the SE's could continue for a couple of weeks before things started to improve but I didn't expect them to increase so dramatically these last few sessions. I'm also scheduled for a consult this week with a bone specialist. The weather report isn't looking good for that either. Since my bone scan showed that I've moved from osteopenia to osteoporosis, we have to get a plan in place before I canstart the AI's. I've finally decided that maybe I can't do anything about the weather but I can keep hydrating and gooping. I can try to get a nap in this afternoon. I can take some Aleve before bedtime tonight. And I can quit stressing about things I can't control. If I can make it to my appt tomorrow, good. If I can't, maybe my skin will benefit from an extra day or two break from the BBQ.

Just Breathe...Just Breathe...Just Breathe...

egregious

FaceForward, you are SO CLOSE. You can do this. It might be rough for a couple of weeks but it's sweet to leave the medical visits behind.

Pain meds, special treats, watch movies, whatever is going to get you through. I promise it gets better!

OTMom

Right there with you, FaceForward. My last day is Tuesday. Snow predicted here on Tuesday, but I WILL be there. The patch under my arm is super painful today- I totally get that shredding feeling you describe and the way it can keep you awake. I have a rotating stash of soothies for my nipple. I swap them out periodically for the soothing cool feeling. I've experimented with putting them on other areas as well. So ready to be done with this. Not sure how I will manage to wear clothing this week. I have a CT and follow up with pulmonology about a lung nodule on Wednesday and then maybe I get a little bit of a break from the daily trips to the hospital. That will be nice.

I meet with my MO tomorrow. Dexa showed osteoporosis in my spine and osteopenia in my hip, so not sure what will come of that. Generally an emotional trainwreck this weekend. I think the fatigue and the unknowns/fear about hormone therapy and the needing to resume "normal" life from here are all hitting full force.

Welcome, Piksie and beach5!

Jen2Mom

Hello to all the newbies to the page! This week was emotionally better for me and I think it's because I took a half day Wednesday to rest. my daughter came down with bronchitis and has shared the congestion and sore throat with me, my voice comes and goes. quick question for those of you with drain sites, I have started have short, stabbing pains on the radiated side at the drain site underneath my foob. it's not burnt per say but a very hurtful feeling. Any ideas?

Facefoward: I hope you are able to get to your appointments to have it over and done with! I hope your skin treats you nice tonight and you can get some rest

OTMom: I hope you are able to make it to your last appointment. so many appointments are exhausting!

Mymomsgirl

OTMom and FaceForward good luck with the weather and finishing. I have 3 more days left and fortunately the weather is supposed to cooperate, I'm ready to be done. I wanted to share a little piece of advise that I got from my Plastic Surgeon during a post op appointment this past Thursday, she said double up. I was using Aquaphor and she said to use something like Cerave Moisturizing Cream first and then apply the Aquaphor. She said the cream will absorb better in the skin and the Aquaphor will act almost like a sealer. She is happy with my progress from my reconstruction but said moisturize, moisturize, moisturize.

Piksie unfortunately the fatigue is real. Mine kicked after 9 treatments, I have found if I have something to do like work then I have found the energy to power through, but I did spend this weekend sleeping in and taking it easy.

Jen2Mom I've had a few stabbing pains as well but I didn't think much of it because both my BS and PS said I may have that for several months with the healing and I'm sure the swelling from the radiation is adding to it. If you are concerned you might want to give your PS a call.

Here's to powering through another week.

FaceForward

Holy Cow! Blowing, snowing, drifting here. We're on a private road with a long steep road down and a ravine at the bottom of that. There's not many homes up here and it's a private road so no plows come here. We have a guy that usually plows but it's been too icy this weekend even for his tractor. This year is a very unusual weather year for us. Getting to my appointment tomorrow is looking highly doubtful. Oh well. At least I'm stocked up on hot cocoa and comfort food. Cortisone and Netflix are my friends and I'm prepared to snuggle my itchy, swollen, exhausted self in for the duration.

Thank you everyone for all the encouragement! We will all get thru this eventually.